CJ is a little boy with a big smile.
“CJ is the most smiley, outgoing baby,” said Tracy Van Hattum, his mother. “He’s always got a smile on his face. … He just brightens up a room.”
But the big grin that Van Hattum said can turn around “even the darkest of days” hides something most people can’t see and what the 2-year-old is still too young to understand: cystic fibrosis.
“People look at you funny when you tell them your child has CF. He looks perfectly fine; it’s not something you can see,” said Van Hattum, of Albany.
Inside his little body, CJ is far from fine. CF affects around 30,000 people in the U.S. and attacks the lungs and digestive tract, so the simplest ailment, like the common cold, can last twice as long and CJ has been on antibiotics on and off since infancy.
“It makes every day living a challenge,” said Van Hattum.
She’s determined to help find a cure in her son’s lifetime so that each day doesn’t have to be a struggle, so Van Hattum raises money for The Cystic Fibrosis Foundation to fund research. On Sunday, March 25, she’ll hold the 2nd Cystic Fibrosis Cuts For a Cause at Destiny’s Hair and Nail Salon at 372 Delaware Ave.
“Anything we raise goes toward life saving research,” said Van Hattum. “Last year, we made about $1,500.”
People interested in a haircut or trim can make an appointment for March 25 from by calling 462-0226 or just walk in that day from 10 a.m. to 5 p.m.
“I just opened my doors for them to come in. I’m always open to stuff like that and it’s on a Sunday and that’s originally when we’re closed so it kind of worked,” said Cindy Bishop Patel, owner of Destiny’s. “It was a question asked and a simple answer.”
Van Hattum said raising money and educating people about the disease are important in their own way.
“People don’t understand the disease and that’s my whole goal now to make them understand,” said Van Hattum. “It’s a mother’s love for her child. Life expectancy is 37 and that’s just too young for me.”
Van Hattum spends her days giving CJ nebulizer treatments, adding salt to his drinks and feeding him Vitamin D, a multivitamin and enzymes. She makes monthly trips to the doctor.
“This has just become a typical, every day thing,” said Van Hattum.
Like many 2-year-olds, CJ is a picky eater, but with CF he can’t afford to be.
“He’s not a big fan of eating and with CF you really have to force them to eat, he has to have the calories, has to have the enzymes,” said Van Hattum. “He’s extra picky and still eating baby food and Pediasure for extra calories.”
For the most part, though, CJ leads the life of a normal baby.
“He doesn’t know enough to let the disease take over but he’s just this energetic little spitball. He doesn’t stop going,” said Van Hattum. “He’s hitting all his milestones like he should be.”
In two years, Van Hattum has raised about $19,000 for The Cystic Fibrosis Foundation and since this January, has already raised about $1,000. She said there is constant progress made on the research front, which gives her hope and the drive to keep going.
“Within the past few months they have found a drug that’s almost like a cure for 4 percent of the population that has CF. There’s so many different mutations of the gene,” said Van Hattum. “We keep crossing our fingers and hoping if we keep up with this, maybe his gene will be the next one they concentrate on and find a cure.”
Perhaps the deepest motivation for Van Hattum’s tireless efforts is that she was never supposed to be a mother.
“I was told I’d never have a child; there was no way, come hell or high water, I’d ever have a child,” said Van Hattum. “To me, God gave me this miracle, whether this miracle is healthy or not healthy, it’s a gift and I’m going to do whatever I can to take care of it.”
CJ’s grandparents and father are Van Hattum’s day-to-day support system but she said it’s the community that’s really stepped up.
“We couldn’t do it without the community,” said Van Hattum, who does the majority of fundraising from February to May. “It’s a fight but you do it out of love. … Hopefully one day I can look at him and say, ‘We were able to spread awareness and find a cure for you.’”
Cuts For A Cause on March 25 kicks off the spring fundraising events. Men’s and children’s haircuts are $10 and women’s are $20. Every Monday in April, 25 percent of the profit from dining at Mingle on Delaware Avenue from 4 to 11 p.m. will be donated to CF. On April 14, Glow Golf at Crossgates Mall will be an all-day event with a percentage of proceeds donated to CF. For tickets, email [email protected]. To donate directly or read more, visit Van Hattum’s fundraising page at http://www.cff.org/great_strides/TracyVanHattum.
